Here is Stephen Heywood's PatientsLikeMe profile.Click to see a full-size image

Left to right: Ben, Stephen, Jamie's daughter Zoeand Jamie

Where did the idea for PatientsLikeMe come from?

When we found out Stephen had ALS (Lou Gehrig's disease), his diagnoses set in motion a series of events that led to PatientsLikeMe. We were incredibly lucky as a family to have the resources we had to manage Stephen's illness. Through Jamie's work at ALS TDI, we had access to the best research, activist patients, top clinicians, and technology and treatments that could make a difference in Stephen's life.

The idea really came together when Jamie began dating online and realized that those services were essentially clinical assessment tools -- something patients could use to find patients just like them. Once Jeff Cole (our co-founder) and I decided to make it a reality, we began refining the concept, and PatientsLikeMe was born.

How does it work? How is it different from other health care social networking sites?

Imagine knowing every medication, supplement, or device used to treat your disease. Imagine knowing which treatments work for people just like you -- and having the ability to easily connect with those people. That's what makes PatientsLikeMe different. Seeing the disease progression and the treatments that have yielded those outcomes can help patients and physicians employ a more personalized treatment plan.

Specifically, patients input their diagnosis history, disease progress, symptoms and treatments using a simple user-friendly interface. This information creates a picture of their disease progress, which is shared with other users. The information is also aggregated into reports so patients can learn from the entire community.

The power of having a community of "patients like me" was demonstrated recently when we had a user whose weight was dropping precipitously, which can accelerate a patient's deterioration in ALS. Because patients track and share their important outcome measures, another patient was able to remind him of the importance of keeping his weight up.

Who are the primary users?

Patients -- our primary focus is always the patient. We also encourage patients to invite their care team to join our communities, because we feel everyone -- doctors, caregivers, researchers, and others -- can learn from the information our patients are sharing.

We also have patients from over 40 countries, including the UK, Poland, Greece and others. This disease knows no borders, so we have a researcher based in the UK and attend multiple international scientific congresses to share PatientsLikeMe data and concepts. On a pure numbers basis, we are currently capturing over 5 percent of the newly diagnosed ALS patients while approaching a 1:1 ratio of care team members and guests.

What do you do with the data? How can you ensure its integrity?

Our mission is to improve the lives of patients through new knowledge derived from shared real-world experiences and outcomes. Specifically, we share the data with the community so they can learn from each other.

In regards to data integrity, we are constantly working on mechanisms, both technical and community based, to ensure the safety and accuracy of our data. Because the data we are collecting are patient-reported outcomes and treatment regimens, PatientsLikeMe represents what is happening in the real world. However, we always need to recognize and reduce any bias that our patient-reported data may have.

In our ALS community, we have individual patients tracking over 45 separate treatments (treatment information that wouldn't be collected in any other environment) against outcome measures, often more detailed [information] than clinical trials. Additionally, we are capturing not only the ALS-related treatments, but also those of co-morbid conditions our users have.

We are also engaging research-based organizations to provide insights that can lead to improved treatment options. There is a lot of potential for the insights we can gain from these communities and the data they share. In fact, we have already presented the PatientsLikeMe system for community-based patient-reported data collection at scientific meetings, as well as had some of our research published in response to a peer-reviewed article.

What was the research that was published?

One of our researchers, Dr. Paul Wicks, recently read a published clinical observation report on two ALS patients experiencing excessive yawning. Several patients were already tracking excessive yawning as a symptom on PatientsLikeMe, through our user-added symptom tracker. Using a system-wide invitation, patients were asked to endorse whether they experienced none, mild, moderate or severe excessive yawning, described as "attacks of uncontrollable yawning, sometimes when they are not even tired."

The results were impressive. Excessive yawning was reported to be absent in 30 percent of responders, mild in 30 percent, moderate in 32 percent, and severe in 9 percent. Dr. Wicks also identified an unexpected association between yawning severity and site of ALS symptom onset. Patients with a bulbar onset of disease (57 percent) were more likely to have moderate or severe yawning than patients with arm onset (42 percent) or leg onset (31 percent). [Bulbar-onset ALS affects an area in the brain stem first; initial symptoms usually include difficulties in swallowing and/or speaking.] Dr. Wicks was able to respond to the case report within two weeks of its publishing with a sample population of 254 and taking only about 10 hours of time. These results are being published as a letter in response to the original article.

What are your future plans for the site?

The bigger our communities get, the more information there is for everyone to learn from. In ALS, we will continue to make improvements to the site and grow the community while mining the data for answers for patients. For example, we just implemented data quality grading of patients where users earn stars for filling out their profile, keeping their information current, and tracking periodically over the course of their illness. We are beginning to track equipment models so patients can learn which specific brands work best.

We are also about to launch our multiple sclerosis and Parkinson's disease sites (and are looking for beta testers). As for the rest of 2007, we are very excited about the planned upcoming communities.